The Autism Conference (A Story About Functioning Labels)

"If a horse is sick,

you don't ask a fish what's wrong with the horse.

You go right to the horse's mouth."

~Carly Fleishmann, nonspeaking autistic

Inspired by part of this post from Tumblr user lauralot89.

This is a work of fiction, which does not make the very real ideas presented within any less painful.

Scheduled conferences about autism are a regular thing in this world. They're held all the time, and whenever a conference is coming up, autistic people sneak into the room a little beforehand. We're required by the neurotypicals (NTs) to wear a label, large and bright, so everyone can see the label just by looking at us. There are only two labels: High and Low.

The Highs are verbal, and the Lows are not - that's the only thing consistent in these groups. Some Highs and Lows alike are able to work. Some have live-in caregivers or are still living with their parents. Some drive, or are able to rely on public transportation in their area to get where they need to go. None of this is really taken into consideration when we receive a label. All that matters is whether or not we can speak.

When we are all together, the labels don't matter. We understand each other. When someone needs to leave the room to get some space, it doesn't matter if they are a High or a Low. When a Low shows us a new way of communicating - whether by typing, writing, using text-to-speech, PECS, or anything else - everyone else, High and Low alike, pays attention and adapts so they don't feel left out. We have people just like us here, and that's invaluable.

But now the conference is beginning. In come the NTs. They look around the room at us and sigh. They don't want to have a meeting this way.

The Highs voice that they want to participate, but are sent outside anyway. "You aren't anything like the Lows. I know you have a diagnosis from a professional, but you act differently than we expected; clearly, you'll never know what it's like to really have autism. You can do things the Lows will never be able to do, which we know for a fact, because we're fortune-tellers and can predict the next half-century or more of every single Low's life. Oh, I know it's an autism conference, but we're only going to talk about Lows. Go play outside."

Next, they pat the Lows on the head and smile, telling them very slowly that it's fine to stay in the room, but all of them have to sit under the table. Won't that be fun? Please don't bother us. We have important things to talk about. Okay? Do you un-der-stand?

They begin the conference.

"My son is a Low!" one NT announces. "It's just such an awful burden on the whole family. Yesterday he banged his head on the wall so hard, I had to make sure he didn't have a concussion. Didn't he take the time to think about how hard it is on me to do something when he's in pain? Oh, and before he banged his head, he'd been trying for more than fifteen minutes to ask me to turn my music down a little because it was too loud. Do you think that might have something to do with it?"

Her son sits at her feet under the table. He can hear every word, but because he is a Low, she's decided he can't possibly understand. She's also taken the tablet he uses to communicate, so he can't possibly interject and "bother" them by explaining his head-banging is a stim, a way to cope with being so overloaded by the music that he couldn't think.

The conference goes on in much the same manner. Once in a while a Low will try to get their attention and communicate that they hate the labels, or that the Highs know more about autism than NTs do, or that NTs make too many assumptions about them. Each one is met with a polite chuckle and a Very nice, dear, in the manner one would respond to a five-year-old, except that many of the Lows are full-grown adults.

The Highs rap on the window, try the door over and over, do everything they can think of to try and get inside. NTs roll their eyes at them and go back to talking.

"So I was thinking, we should really figure out how to cure autism, or invent a prenatal test to abort autistic fetuses," one announces. "I'm not autistic myself, and I've never asked a single autistic person about it, but I just know all 70,000,000* or so of them desperately wish they weren't autistic or had never even been born. I think we should - "

"Wait a second. Where's that one father who was here last week?" another interrupts to ask.

"Oh, you mean Melissa Stoddard's dad! He was charged with her murder."

"What, really?"

"Yup. Just like London McCabe's mom, Chad Jackson's mom, Daniel Corby's mom, and Jeremy Bostick's dad."

"Wow. Those poor parents, they were so overwhelmed, they must have just snapped."

Outside, the Highs begin to weep. They weep not just for the names mentioned, but also for Katie McCarron, Ryan Davies, Scarlett Chen, Christopher DeGroot, and so many others. They weep because none of the words at the autism conference are aimed towards the autistics themselves, the ones who were tortured, or starved, or poisoned, or beaten, or neglected, or any other number of unspeakable things.

A NT sighs, hearing their sobs. "Now I understand why we don't let them stay inside when we have meetings," he declares. "They're so rude, acting like that while we're right here trying to discuss. Don't they have any empathy for other people?"

The Lows are still huddled under the table. They have been crying for some time.

(* Roughly 1% of the world population is autistic. Source here. The world population is over seven billion as of this writing, which equals over seventy million autistic people worldwide. For comparison, the United States has a population of nearly 319 million, meaning there are over three million autistics in this country alone.)

By the Way, You're Autistic

"Even if you think a lie is helping, it usually ain't.

Someday that person'll learn the truth,

and you'll have to look him in the eye."

~Kyle Hyde, Hotel Dusk: Room 215

Every time I hear a parent worrying about how to tell their child they're autistic, or worse, announce that their kid doesn't need to know yet, I cringe a little. Although they may mean well, it all comes from the same thought process: that being autistic is bad, that it's at the center of all their problems.

It's not. Autism is just autism. If you're looking for a sign, this is it: let your child know they have autism. Today.

You aren't doing your kid any favors by hiding it from them. If they socialize at all with other people in the world, and especially if they're in school, I guarantee you THEY ALREADY KNOW.

Now, I don't mean they know they have autism, but they know that something is different about them. I was twelve years old before someone saw my symptoms for what they were, and that evening I went home and did as much research as I could manage. Not because I was afraid, but because it was freeing.

I found the criteria from the current DSM and took tests and read, read, read. By the end of the week, I knew (side note: I was later officially diagnosed by professionals). Rather than being afraid, I was grateful for the "label" of autism. I realized there was a reason I seemed so much different from my peers, didn't always understand what people were saying, and had trouble regulating my tone and body language. Not only that, but I wasn't the only one who was like this. There were thousands of people out there just like me, and the autistic community was out there, happy to welcome me with open arms.

Finding out about autism can be a huge relief, whether you're the one who discovers it or someone else tells you.

Yeah, but...how do you do that? What if it makes him think less of himself? What if it leads to her not trying as hard and using her autism to excuse that?

We aren't born understanding disability. We get a sense of it from the people around us and from society. It's the same as anything else. Chances are, if your child is fairly young, they don't even really know what the term means.

You don't have to say it in any special way. Just tell them. There's no need to overload them with information - just say it, and wait for a response.

For example, you might say something like: "Do you remember we talked about how when school starts, you're going to be in a special class? You're going to be in the special class because you have something called autism."

If the child asks what that means, you can give them a brief, age-appropriate explanation. Make sure you don't portray autism as wholly bad. Doing so is extremely detrimental to someone's self-esteem. We're autistic for life, and it affects everything right down to how we think and feel. Autism isn't a "bad guy" or "monster" in our heads, it's just something that makes us different.

That's actually one good way to approach it with kids. "Autism is something in your brain that makes you think differently. There are lots of other people out there who have autism. Some of them are kids your age, and some of them are grown up. If we get to know other autistic people, we'll know more about the way you think, and some of them could become your friends, too."

If you focus on the "can'ts," so will your child. If he grows up constantly hearing, "Oh, he can't do that. He's autistic," pretty soon it'll be him saying, "I can't do it because I'm autistic." That is where using autism as an excuse comes from. Autism should be an explanation, not an excuse. Kids take their cues from their parents. Focus on how you portray autism, and they'll pick it up.

As always, books are a great resource for helping kids learn more. Here are a few recommendations:

• I Love Being My Own Autistic Self! by Landon Bryce. This is a great introduction to what autism is, and explains it in a way even younger children can understand. It portrays different points of view from both autistic and neurotypical characters, with the emphasis on the neurodiversity movement.
• Different Like Me: My Book of Autism Heroes by Jennifer Elder. The book recommends itself for kids between the ages of eight and twelve. Plenty of famous and important people from history are detailed inside, both their accomplishments and how autism affected them, even though the term "autism" wasn't around when many of them were living. (Note that this book does use the outdated term of Asperger's, but it would be suitable for kids who fall anywhere on the spectrum.)
• Loud Hands: Autistic People, Speaking by Julia Bascom. Perfect for autistic teens and adults, this is a collection of essays written by and for those on the spectrum. There are plenty of different perspectives offered, and so many topics are covered. It's even published by the Autistic Self-Advocacy Network, which is a great resource.

It's time to tell your kids that they belong to the autistic community. We'll be waiting to welcome them, regardless of age or ability.

When Therapy Becomes Abusive

"The measure of an individual
can be difficult to discern by actions alone."

~Thane Krios, Mass Effect 2

Autism and therapy tend to go together, especially for autistic children. There are therapies designed to help autistics improve motor skills, work on speech, and fine-tune their social interactions. One commonly-recommended therapy is ABA (Applied Behavioral Analysis). It's also one of the most controversial. Some parents claim their child made huge strides with ABA, but meanwhile, at least one child out there has developed PTSD from it.

All therapies - including ABA - can be beneficial, but they also carry the potential to be harmful or even abusive. I wanted to talk about the warning signs that may signal the therapy is doing more harm than good, whether in the short term or the long term.

(Note: I do refer mainly to the autistic person as a child in this post, because there are very few - if any - therapies designed for teenagers or adults at the time of this writing. If your situation is different, please mentally edit in the appropriate word in place of "child.")

• Red flag: Regular protesting or agitation when it's time to go to therapy.

I know, everyone has bad days sometimes. Chances are you don't get excited about going to work every single day, but if every time you have to go to work, you're in an awful mood and dreading it, chances are something's wrong. Similarly, if a child gets upset every time they have to go to therapy, it's time to sit down and ask very careful questions about what's wrong. If they can't or won't explain, sitting in on a therapy session might be a good idea. Any therapist who refuses to let you observe a session (key word observe - not interfering with the therapy) is another huge warning sign.

• Red flag: Therapy is extremely intensive and/or doesn't allow for breaks.

This is more important the younger the autistic person is. I've heard horror stories of three-year-olds recommended for forty hours a week of therapy - that's as much as a full-time job. With eight hours of therapy added to the recommended twelve hours of sleep, plus time for meals, transportation, hygiene, and so on, now that child has five days out of the week jam-packed, every single week. No time to see friends, no time to play at home, no time just to relax. That's not healthy for anyone, especially not a preschooler.

Long therapy sessions should either have time set aside for a break here and there (again, more frequently the younger the person is), or at least allow it if the autistic person asks for a break. Therapy is designed to stretch a person outside of their comfort level. Doing that for any length of time can be exhausting.

• Red flag: The child's personal boundaries are violated, and/or they are not allowed to say no.

As sickening as it is, there are predators out there who prey on the autistic. In fact, disabled kids are almost three times more likely to experience sexual abuse than those who aren't disabled. It's important for all children to know that their bodies deserve respect, but this is especially true for those with autism.

Because a common trait of autism is not liking touch (either in general or just certain touches), there are therapists who will try and work on this. Forcing or trying to persuade a child to hug or kiss anyone, even family, or touching them in any way without permission can open them up to risk of abuse in the future. People of all ages need to know and understand that their body belongs to them, and that they can and should object if anyone tries to harm them.

• Red flag: Some or all of the therapy goals focus solely on making the person act "normal" or "like everyone else."

You can't remove autism from a person, or "cure" them, or anything of the sort. You just can't. Throughout my life, people have tried to teach me appropriate eye contact, the right way to make small talk, and not to flinch away or start stimming from discomfort at the texture of styrofoam. None of this hurts anyone, so why did they want to train it out of me? My best guess is that they just wanted me to seem more "normal." All the years of making me feel stupid and self-conscious, and it brought next to no progress. Autism is always going to be there.

• Abuse: Food or other basic necessities are withheld at any time, even briefly.

No child should ever be told they can't use the bathroom until they ask "properly" (verbally instead of nonverbally, or with better pronunciation, or asking without flapping their hands, etc). Similarly, food shouldn't be denied because the autistic person isn't doing exactly what the therapist wants.

• Abuse: Nonverbal, or imperfect verbal, communication is ignored.

It's a story I've heard more than once: a child with severe speech delays is sent to therapy to improve their communication skills, and the therapist ignores everything but perfect speech. He wants a drink of water and points to the water jug (or signs water, or says, "Wawa," etc), but it isn't given to him. At best, he's ignored completely; at worst, his attempts to communicate are mocked or belittled while he's left to dehydrate.

(Assuming improved verbal communication is a goal in this situation, a good therapist will take the chance to gently work on asking for water, let the child try a few times, and then give him some regardless of whether or not he made progress.)

• Abuse: The person is not allowed to stim at all.

This one has a two-part answer. Yes, there are stims out there that need to be dealt with, but they're either harmful (head-banging, biting, hitting, etc) or destructive (peeling paint off the wall, spitting on things, and so forth). Working on these kind of stims is not abusive. However, eliminating them is often much harder than redirecting. A child can be taught that hitting people isn't okay, but she's allowed to hit a pillow, for example.

What's abusive is not allowing any kind of stimming, even those that are harmless (hand-flapping, rocking, standing on tiptoe, etc). For autistics, stimming is very helpful and sometimes even essential for regulating our emotions and preventing meltdowns. To add to that, trying not to stim is like trying not to scratch an itch: it consumes more and more of your energy until you're slowly going out of your mind trying not to do it. There is nothing wrong with harmless stimming. Period.

• Abuse: You'd consider it abuse if it was being done to a neurotypical child.

Plain and simple. They may call it therapy, but if anything is being done to your child that you consider unacceptable, it's time to listen to your instincts.

After that list, it might sound like therapy is just a list of negatives, but there are absolutely good therapies out there as well. Assuming a therapy doesn't include any of the above points, it's generally a positive experience for all if:

• The therapist is engaged with their clients, and seems to genuinely like their job.
• The autistic person feels happy and respected.
• You're given, but not pressured into, ways to continue working towards the goals outside of therapy.
• Everyone gets along.
• The autistic person is treated like a person, not a problem to be fixed.

Therapy can help a lot. The important part is making sure everything is in place for that to happen.

Don't "Light It Up Blue" - Why Autism Speaks is Terrible

April is Autism Awareness Month. Every April 2nd, the charity Autism Speaks has an event encouraging people to "Light It Up Blue," i.e., wear blue shirts to spread awareness.

Please do not do this. Not if you know someone who's autistic, not if you have an autistic child, not if you're autistic. Autism Speaks is a terrible charity.

They create content designed to portray autism as frightening and awful. For example, this video, "Autism Every Day":

(Note: This video is not something you want children overhearing, particularly if they're autistic.)

The entire thing is shocking and heartbreaking, but the part that stuck with me was when Alison Singer said she'd contemplated driving herself and her autistic daughter off a bridge so she didn't have to enroll her in a special school, and the only reason she didn't was because she has another child.

As if saying this with her autistic daughter in the same room wasn't bad enough, this woman used to be one of Autism Speaks's executives.

According to them, autism is a "crisis," something that causes children to "go missing." Even their logo is a puzzle piece to show that autistics are "missing a piece of the puzzle," and that autism is a puzzle to be solved.

We are not puzzles. We are not missing. We're right here, and we're just as complete as you are.

Autism Speaks does not have a single autistic person on their board of directors. They're speaking about us without us. A lot of their board members have autistic children, but not a single one has autism themselves.

How, exactly, can you call your charity "Autism Speaks" and not have even one autistic person speaking alongside you?

Autism Speaks aims to prevent and cure autism. Right on their about page, it says they're funding autism prevention and cures.

Well, autism is hard-wired into the brain. The only way you could remove it would be to transplant a brain, which isn't possible - and even if it could be done, you'd lose the entire person, not just their autism.

The only way to prevent autism would be to make sure that autistic people aren't born. The only way to cure autism would be the murder of autistic people.

Oh wait - that's already happening, all the time.

Autism Speaks has an alliance with the Judge Rotenberg Center. This is a facility that does such disgusting things I don't even feel comfortable typing them out.

The JRC uses electric shocks not just to remove problematic behavior (although that would be bad enough), but also to eliminate harmless stimming, and for completely normal behaviors such as crying, saying "no," and getting up without permission.

They leave people in restraints for prolonged periods of time, withhold food, and cause severe psychological damage. They treat autistics in ways not fit to treat a dog, and have caused multiple deaths as a result.

Here is the beginning of a four-part series written by a woman who survived the JRC program. It is stomach-turning and extremely difficult to read. For many autistics who have done nothing to deserve it, it is a reality.

Autism Speaks spends less than 1/20 of their annual budget on family services. According to their 2010 990 Tax Exemption Form, 21% of their budget went towards "awareness and advertising." 5% went to paying salaries and other administrative costs (some salaries are upwards of $400,000 a year). Meanwhile, just four percent went to family services.

Oh, and let's not forget the time they rescinded a job offer because the woman they wanted to hire asked for accommodations for her autistic son. (The kicker? She was asking to get off early one day a week, and offered to make up the hours another day or take a pay cut.)

"Lighting it up blue" erases autistic girls. Autism Speaks has gone on record as saying that they use the color blue to represent boys with autism because "Autism Spectrum Disorders are almost 5 times more common among boys (1 in 54) than among girls (1 in 252)." So are approximately 20% of autistics out there not worth considering? Is it worth disregarding the fact that they exist because there aren't as many of them? Apparently, as far as Autism Speaks thinks.

Do not light one single thing up blue tomorrow.

Let's celebrate autism ACCEPTANCE, not awareness.

And in celebration of autism acceptance, let's support the Autistic Self-Advocacy Network, and leave Autism Speaks in the dust.